User Reviews for Tocilizumab
Also known as: Actemra
The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.
Learn more about Tocilizumab.
|Rheumatoid Arthritis||13 reviews||345 medications|
|Juvenile Idiopathic Arthritis||4 reviews||10 medications|
|Summary of Tocilizumab reviews||17 reviews||8.2|
Reviews for Tocilizumab
Actemra (tocilizumab) for Rheumatoid Arthritis: "I was diagnosed with RA in 1987 after giving birth. Since then I have tried almost every drug available and my RA continues to ravage my joints. Actemra is working pretty well but I have had to go off of it for a time because my white blood count dropped too low. I've been back on it for almost a year, I had to reduce my methotrexate in order to keep the WBC up and take 3mg of folic acid daily and 1mg of prednisone with frequent use of meloxicam. I am on Medicare. I can not get assistance for the drug that worked well, Simponi. J&J did not offer assistance and I could not afford the high copay. The best thing about Actemra is the compassionate patient assistance team. They are always caring and helpful when I call them."
treeod (taken for 2 to 5 years) May 16, 2017
4 users found this comment helpful.
Actemra (tocilizumab) for Rheumatoid Arthritis: "The only drug that works for me"
Suzannemari (taken for 5 to 10 years) April 18, 2017
3 users found this comment helpful.
Actemra (tocilizumab) for Rheumatoid Arthritis: "I took the first dose of Actemra and felt a little dizzy but that did not last long. My stiffness was reduced and for the first time in two years felt like myself again. The only problem is that my lip was slightly swollen but went away in about two days. The medicine last for about 4-5 days then I started having severe pain in my joints especially my elbows and shoulders. I had to take pain medication which did not help much. Overall I love this medication and I can't wait for my weekly injection."
Dwereley March 3, 2017
8 users found this comment helpful.
Actemra (tocilizumab) for Rheumatoid Arthritis: "I have had RA for nine years that was managed well with Plaquenil for eight and it stopped working. I tried Enbrel with Methotrexate and Prednisone for nine months. Vectra-DA test showed high RA disease activity with Interleukin 6 protein as main culprit. Discontinued Enbrel and began Actemra self injections. Two days after sixth dose, I woke nearly pain free. It has continued to improve the last several weeks, as well as reduced stiffness and fatigue. Only side effect has been an occasional mild headache. For me, the Vectra test and Actemra have been game changers in the management and treatment of my disease. I could not be more pleased."
ColoradoRAFighter (taken for 1 to 6 months) October 18, 2016
17 users found this comment helpful.
Actemra (tocilizumab) for Rheumatoid Arthritis: "I was diagnosed with RA over 15 years ago. At my worst I sat on the couch with my pain pills in one hand, and the TV remote in the other. I was unable to stand or walk without assistance. I was approved as a patient for the clinical trials for Actemra, and for me this was a life changer, a total reversal of what my life had become. I finished raising my two sons, work full time, and even earned my degree in the last ten years since taking Actemra. While I still have some flares a times, my overall life has improved 100%. My SED rate dropped from 130's to under 5, the only thing I still struggle with is the insomnia and fatigue. I have been truly lucky as I have not experienced any side affects in the 10 years I have been on Actemra."
Suzi Q (taken for 10 years or more) October 6, 2016
19 users found this comment helpful.
Actemra (tocilizumab) for Juvenile Idiopathic Arthritis: "Actemra is the best medicine! I was diagnosed with polyarticular JIA when I was 13 years old. Now I am 19 years old. I tried many medicines: methotrexate, sulfasalazine, leflunomide, enbrel, remicade. And my arthritis was always active... But after my first Actemra infusion I felt the difference. Now I get these infusions since May. And I don't feel any pain, stiffness or swelling. I remember that I have arthritis not because my joints hurt but just because I need to go to the hospital for IV infusions. Now I feel like a healthy person! And I feel like that just because Actemra! Oh, and I also want to say that I don't have any side effects! P.s. sorry, I can write with some mistakes because english is not my first language, I'm from Europe."
laura123836e6w819191926e7 August 11, 2016
15 users found this comment helpful.
Actemra (tocilizumab) for Rheumatoid Arthritis: "I am 39 years old and have been diagnosed with juvenile RA at the age of 15. Now my diagnose is seropositive RA. I have been on all existing meds but my problem is that they work for some time and then stop working completely. I had to wait for years to be put on biological therapy. Now, I have been taking Actemra for 1,5 year and it worked I would say between 4th and 9th month. The last six months I see that it's no more effective for me. I am again in a lots of pain and I can't function normally. I said it to my rheumatologist and she gave me Arcoxia as a NSAID to be taken and maybe cease the pain. It's not helping at all, so she said that we do a switch to another drug. Hope it would work better for me this time."
Mus763 April 25, 2016
10 users found this comment helpful.
Actemra (tocilizumab) for Rheumatoid Arthritis: "This is the 3rd treatment for RA i have tried. The 1st was Remicade which helped considerably but I had an allergic reaction so I couldn't use anymore. The 2nd was Orencia which didn't have an impact at all. The Actemra is working but I'm experiencing all sorts of side effects like increase in cholesterol and blood pressure as well as blisters and boils over my body. Kind of scary as it's only been 2 treatments."
PSF314 January 28, 2016
22 users found this comment helpful.
Actemra (tocilizumab) for Juvenile Idiopathic Arthritis: "Switched from Kineret which I was on for 9 years and it wore out, then switched to actemra & was on it for 3 months, it did nothing for me, very little relief, & 40% of my hair fell out, I'm only 20 years old & I've had JIA since 7yrs old, still trying to find a remission drug"
OhTay December 9, 2015
7 users found this comment helpful.
For Rheumatoid Arthritis: "While I did find that the medicine moderately relieved most of my RA symptoms, I found that I developed an absurd amount of mouth ulcers/ canker sores. I would get them everywhere in my mouth, including 3 nickel sized cankers on my soft palate which made it very difficult to eat. I finially had to stop taking the medication due to the cankers."
JD-JRA April 14, 2015
1 users found this comment helpful.
Actemra (tocilizumab) for Rheumatoid Arthritis: "I had tried Orencia, which worked for three months and then quit. Next, I was on Rituximab, but after a year and a half, my rheumatologist and myself decided to switch, as it was not helping enough. My rheumatologist suggested Actemra and life has come back to me! I have only been on it a year and a half, but during this time, I have felt so much better. My C-reactive protein went from 38 to 1 and my SED rate has gone from 18 to 0.1. Interestingly, the IL-6 protein was my culprit and Actemra targets that protein. With todays Vectra-DA blood test, studies are finding which biologic medications can work the best for you. Rheumatologists are also finding the sooner they turn down your symptoms, the easier it is to control inflammation caused by autoimmune disease."
ItsmeWayne (taken for 1 to 2 years) March 26, 2015
62 users found this comment helpful.
Actemra (tocilizumab) for Juvenile Idiopathic Arthritis: "I started on this after failing treatment with two other injectibles. At 4 weeks I felt great! Like I had nothing wrong with me. Now at three months I still feel better than before but I definitely begin having pain for a couple of days before my injection. This is better than any other medication I have been on for this."
ALEXA LEE (taken for 1 to 6 months) January 2, 2015
15 users found this comment helpful.
Actemra (tocilizumab) for Rheumatoid Arthritis: "I have very active rheumatoid arthritis, I started Actemra in May 2010, it took 8 or 9 months for it to start working. March 2014, I had a low white blood count, called Neutropenia. Stopped Actemra for 3 months, now I'm on a 1/2 a dose. Tried many other meds over the years, but nothing worked like Actemra for me. I hope I can keep taking it. Time will tell. So many side effects to look out for. 55 year old female on Medicare."
wonderful1 (taken for 2 to 5 years) June 16, 2014
57 users found this comment helpful.
Actemra (tocilizumab) for Juvenile Idiopathic Arthritis: "After many different medicines, this medicine worked the best! Happy with results."
Anonymous (taken for 6 months to 1 year) April 26, 2014
16 users found this comment helpful.
Actemra (tocilizumab) for Rheumatoid Arthritis: "I have had 3 infusions. My ESR have gone from 33 down to 8 & my CRP has gone from 17.9 down to 0.7. This stuff rocks."
chezalsue January 10, 2014
77 users found this comment helpful.
Actemra (tocilizumab) for Rheumatoid Arthritis: "Previous experience with other medicines that were ineffective were Enbrel and Humira. I was on methotrexate for 5 years but was taken off as it caused an enlarged liver. I've been on tocilizumab now for 7 months. Its fantastic! No stiffness and no flares! Took about 8 weeks to kick in fully. I've suffered a few side effects including sores on my hands and feet, bleeding gums and upper respiratory tract infection. Side effects are subsiding now though and seem insignificant due to how good my rheumatoid arthritis has been since on tocilizumab. I feel fantastic!"
JoyfulJo aged 43 May 30, 2013
113 users found this comment helpful.
Actemra (tocilizumab) for Rheumatoid Arthritis: "I was diagnosed with rheumatoid arthritis in 2008. I was put on methotrexate almost immediately. My first stab at a TNF inhibitor went well for about a year. Then, there were a couple of tries with different meds (including the dreaded prednisone for flares). My PA thought that we could "do better".....so, I researched and she researched....together, we came up with Actemra. The stiffness in the morning is GONE! I haven't flared in over a year! I'm SO lucky to have found Actemra. The only thing that kind of bugs me, is that the week before my next infusion is due, I get a little stiff and more tired than usual."
kelsue5202 (taken for 2 to 5 years) March 28, 2013
143 users found this comment helpful.
More about tocilizumab
- Side Effects
- During Pregnancy
- Dosage Information
- Drug Interactions
- Support Group
- En Español
- 17 Reviews – Add your own review/rating
- Drug class: interleukin inhibitors
Other brands: Actemra